Hi there.

My name is Melody and I'd like to offer a possible help to all your symptoms. At least it helped me and I am thankful every day that I found a newer lifestyle (in my food choices). Don't just pooh pooh me just yet. Give a listen.

I used to be a morbidly obese woman with degenerative joint disease, used a cane, my knees were shot and two years or so ago I was diagnosed with diabetic neuropathy. I have been diabetic for 23 years. I am now 63 years YOUNG!!

what did I do? I started to sprout my own food, I eat organic as much as possible. I don't nor did I ever smoke, and I never EVER put anything processed food in my body. Made a big difference in my pain level.

Also (and this is fact, so look it up on the internet), I take 5000 mgs of Methyl B-12 sublingually every morning on an empty stomach).

This nipped my neuropathy in it's tracks.

Look at it this way, you have nothing to lose and everything to gain. Doesn't matter if you are overweight, a normal weight, or whatever. Your body is talking to you and you should listen.

Just google "Benefits of Sprouting" and see what it does for the body. I am not talking about Brussel Sprouts by the way. I'm talking Broccoli sprouts, alfalfa sprouts, radish sprouts, lentil sprouts.

I'm not even talking about eating a raw food diet because that did not work for me. I need the protein and I eat fish and chicken and bison meat. Look up bison and you'll see the benefit of bison over red meat (beef).

I started eating this way and let me tell you for a 63 year old woman who has to take care of sick husband I would NEVER be able to do this if I ate like all the other people on the planet.

No fast food by the way.

If you want to see how I sprout, and how I grow them in my kitchen, (and this takes 1 minute twice a day to rinse and drain the sprouts, well if a person can do one minute every 12 hours, everyone should do this.

If you think you just might be interested to see how HEALTHY EATING just might be beneficial to you, click on this link:

http://www.youtube.com/watch?v=adeh3-LcSbo

It's one of the videos I made (I belong to a sprouting message boards and we have all kinds of people from all parts of the world, and we give each other tips and better ways to sprout various seeds).

You'll see that I use stackable trays, and then put them on my shelves in my kitchen. I don't need anything fancy, because I don't have a lot of money. What I do have is MUCH LESS PAIN everywhere in my body because I don't eat anything inflammatory.

I enjoy this hobby like you would not believe.

And once you see this video, if you think to yourself "wow, let me look into this further", just go to the right and you'll see all my other sprouting videos. I have other videos up and they are all public but I just wanted you to see how easy, how CHEAP, and how healthy it is to sprout your own food.

I eat a sprout salads (that's up on youtube also). In the morning, I grab a handful of sprouts and go to my local breakfast cafe and order an egg sandwich on a toasted roll and I just take out my little ziploc bag of sprouts and I dump them on my sandwich.

I also bring a nice bag of sprouts (broccoli) to my primary care physician because he's a body builder and he LOVES SPROUTS.

Just google the benefits of broccoli sprouts and you'll see why I sprout these.

So when you get a minute (and this is for everyone who sees these postings), why not look into sprouting. You can incorporate it into whatever you eat and they taste wonderful.

I also make an item called Birds Nest patties in which I use my bean sprouts (yeah I grow my own). And I have them up on youtube too.

I think many of our diseases can be traced back to what we put in our bodies.

We only get one body. I plan to be good to mine from now on.

All the best

Melody

"My mother has had parkinsons for 3 years now and about 5 months back it really hit her hard and she basically needs in home care."

My mother had it to. Im wondering what is the link between Parkinsons and
P/N? is there a connection and can it get passed down through the genes?

I guess i should say I havent been officially dx'd with PN and the way my symptoms came on seemed to relate to physical overexertion but dont seem to be going away yet. My mother parkinsons is quit odd also, it almost seems like she may have a form of PN with it. It would be interesting to know if there is a link.

[QUOTE=brohar;740002]I just broke down in front of my fiance because i just dont understand what is happening to me. This was supposed to be the best time of our lives. We are getting married in June in the mountains of asheville, nc. Im only 31 and currenlty undiagnosed for nearly 3 months. I'm lucky to not be in terrible pain but the doctors cant seem to figure out anything and my symptoms dont seem to be getting any better. One day ill think im getting better only to be knocked down the next day with worse symptoms.

Ive remain pretty optimistic but i have moments like these that really tear me apart. Im scared of what the future may hold, how raising a family would be, etc and so on.

I started a sports pick-up group in my city 2 years ago, id never been super athletic but loved sports. In 2 years it grew to 350 people strong. I became one of the top 15 volleyball players in the group, and believe me, my skills started at nothing. I met many great people and kept in great shape and had lots of fun. Now i cant play at all because it makes my symptoms worse. Im just at a loss..

Thanks for listening, i needed to vent and could use any support...


I am pretty much Rosethorne's older sis. Her story is pretty much mine. I am one year and 9 months and no dx. I had a very hard time accepting no dx., but now am happy to reduce sensations/pain. When your physical symptoms are reduced, you will feel better mentally and emotionally. Keep working with Dr's to manage pain, etc.

I have also come to look at the "no dx" in a different way........think of all the things they have eliminated......I am sure you are glad you don't have them!

Even the closest person to you will not understand what you are going though, I made the mistake of thinking they would, only to find myself more and more frustrated and sad & disappointed. It is important they have an understanding of the symptoms, limitations, etc., but they will not understand what it is like to be a person with these symptoms.

Come on this site for your support, we understand.

"Even the closest person to you will not understand what you are going though, I made the mistake of thinking they would, only to find myself more and more frustrated and sad & disappointed"

Invisible this is as stressfull as the P/N itself. My own mother passed, with me not understanding what she went through. Why she stopped cleaning the house, why she stopped showering everyday, why she stopped taking out the trash , why she started gambling everyday then begging me for money when she looked fine to me.
fast forward and the above is me 1 years after her passing. I trade the stockmarket , its gambling really but keeps me focused for 6 hours a day which helps a lot.
I dont know whats more stressful, having P/N or becoming 'invisible"( no pun)
to your friends and family because you simply cant explain convincingly what is wrong with you. I have lost good friends who can only take a no for so long..
Even today I looked at my legs just to make sure they wernt melting. But they look normal, sometimes i wish they had bones sticking out so i could say see? told you it hurts!

Brohar
"My mother parkinsons is quit odd also, it almost seems like she may have a form of PN with it. It would be interesting to know if there is a link".

My mum was identical. Im convinced there is a link.

[QUOTE=zorrro13;740759]"Even the closest person to you will not understand what you are going though, I made the mistake of thinking they would, only to find myself more and more frustrated and sad & disappointed"

Invisible this is as stressfull as the P/N itself. My own mother passed, with me not understanding what she went through. Why she stopped cleaning the house, why she stopped showering everyday, why she stopped taking out the trash , why she started gambling everyday then begging me for money when she looked fine to me.
fast forward and the above is me 1 years after her passing. I trade the stockmarket , its gambling really but keeps me focused for 6 hours a day which helps a lot.
I dont know whats more stressful, having P/N or becoming 'invisible"( no pun)
to your friends and family because you simply cant explain convincingly what is wrong with you. I have lost good friends who can only take a no for so long..
Even today I looked at my legs just to make sure they wernt melting. But they look normal, sometimes i wish they had bones sticking out so i could say see? told you it hurts!

Brohar
"My mother parkinsons is quit odd also, it almost seems like she may have a form of PN with it. It would be interesting to know if there is a link".

Since you both are talking about PD. I was convinced that I had PD, internal tremor and all. I actually paid out of my pocket, a very expensive PET scan (had to go out of town for it), insurance wouldn't cover. It was the only test definitive for PD, but is not recognized by insurance company's (yet.) The test was normal (no PD.) I almost lost my mind during this time. My 20 year relationship with my sig/other and my 40 year relationship with my best friend took a nose dive and hasn't been the same since. We are trying to rebuild in both cases, but it is not easy.

I too am guilty of not understanding my own mother years ago when she was ill, I was her caretaker, but could have done better, in the emotional area, as I now look back and am experiencing my own illness and reaction from my loved ones. I guess these are what we call learning experiences.
Hard learning experiences at that.

Yes, it often helps to have a 'name', a SPECIFIC name to YOUR problem? But there are HUNDREDS of neuropathies!
http://neuromuscular.wustl.edu/alfindex.htm Just LOOK AT THIS LIST?
I've gotten a 'diagnosis'? But each time I see my n-doc? I find a different 'name' in the diagnosis part of it. You see five different docs? You'll get five different 'diagnoses' or 'NAMES' for whatever you have, as have I.
As for treatments? Best thing is to get really and truly tested! Up, down and sideways for any and all possibilities!
Cures? Well, nerves can die miles a minute? But they regrow about 1/2" +/- each per month. So 'getting better' is a sort of relative term.
Truly? Rite now? Finding a good doc to give you a thorough examination and testing then twiggling with various medications is the best one can do. Many meds can either help, or turn you into a zombie or BOTH. But up in the 'stickies' are references to a slew of meds that help one person or another.
Finding the rite doc for YOU, one you feel LISTENS is key to getting somewhere, and -to be honest? It won't be quick. I will be hoping that you get lucky w/a doc or three? [As I had] and get the treatment[s] you need!
Keep your hope, and know you are likely stronger than you ever THOUGHT you could be! Hugs etc. 's!!!!!!!!! - j

Hi All.

I just had to share my experience in understanding PN. My husband has had it or over 20 years. About 8 or 9 years ago they gave him the Fentanyl patch and it worked wonders. He could still work. But he had to go higher and higher and finally he couldn't go any higher and he had to titrate down. They still call it idiopathic but now his doctors think it's related to back problems. They finally see something in his latest MRI's but we have to wait until all this horrid weather is over to finally go to see yet another back doctor.

But this is not why I am writing. I was with him through all his painful episodes but I never understood his pain. He would describe it to me, burning, tingling, zipping zapping, I never understood it.

UNTIL I GOT DIABETIC NEUROPATHY.

I only had the beginning of it, and I had no symptoms whatsoever until my podiatrist used some vibrating tool on my feet when he was doing my toe nails. Well, I nearly killed the man. I started yelling "stop stop, are you nuts, you are killing me". And he goes: "oh you have feeling, good good"

I said "Good Good??? are you out of your mind"?

My feet kept buzzing until I got home. I looked at my husband and I quietly said "Oh my god, this is what you deal with every day for 20 years??"

He said "now you know"

In my case, I was extremely lucky. By coming on this forum, I learned about Methyl B-12 and I immediately went on 1000 once a day and in one week I knew I needed to be on the 5000.

I have never gone off of it. I might miss a day or two but that's it.

Nipped my neuropathy pain in the butt.

Thank god I knew about methyl B-12.

Best thing I ever took.

No one will ever know what you are dealing with until they walk in your shoes.

I really believe this.

Melody

In my life I don't expect people to understand. I just wish for a check in to say hi or see how I am,not to judge,or for people to come up with cures or what they feel I should be doing in my treatment. I have learned to tell people what I need but also what does not help. So I hope with your fiance or who ever you speak up for yourself and talk about how you feel. Also for a person who you live with ask them how they feel and that you understand the toll it takes on them and are there to talk about it.
So much with this condition is unknown of what course it will take. I do live in fear and anxiety but like I said I am trying to work on staying in the day and doing the best I can. My pain doctor says on the bad days do the best you can and on the better days do the most you can.

Reminds me of those lists of "Things NOT to Say to Someone with a Disabling Chronic Condition:", etc. Here's one, but there are many floating around out there....
http://www.cafepress.com/+chronic_co...oster,95347722


I like that. Sounds like my PCP (who was a PM doc for over 20 yrs.)

Doc